Sunday, August 16, 2015

2 x 4 Grief

Many of our blog readers are people of faith, and many are not. Those of you who are long time readers know me to speak casually and frankly about my understanding of God in my life, and you know that in the past I have spoken of being so dense that I literally pray for God to hit me over the head with a 2 x 4 so that I will be absolutely certain that what I am sensing is, indeed, Spirit led and not headstrong Cindy led.

But what do you do when that 2 x 4 that whacks you upside the head is Grief with a capital "G" What about Grief you'd prefer to keep held tucked away, Grief you'd much rather not reveal because the effort of explaining it requires too much of you, Grief that you don't even have sorted out yet and don't have a handle on?

What do you do?

You listen when God begs you to share. You cry out and let your tears speak the words you can't quite find to eloquently express what you are feeling. You set your pride aside, you be as vulnerable as a person can be, and you let God do what God does best...hold you in the arms of others, whisper in your ear through the sweet messages of others, and look into the eyes of others who may not fully understand but who care enough to want to connect in some way...any way.

This week has been one of hard, painful truths being explored. It has been a week of coming to grips with a reality no one wants, but half suspected. It has been a week of emotional depth for many different reasons, coming at me from all sides, requiring of me a level of spiritual maturity I don't really have, but need to have regardless.

I have spent 8 1/2 years advocating for our dear, sweet Kenny. Starting with a blank slate, and quite literally not a single medical record relating to the 8 years that were lived prior to being adopted, Kenny has been...what is that saying? He has been "a riddle, wrapped in a mystery, inside an enigma." And I just snorted out loud with laughter as I looked this up and discovered how apropos it is that this is a Winston Churchill quote about the actions of Russia. Yea, the actions of the former USSR...could this be any more telling?

How many IEP school meetings did I find myself fighting tooth and nail to get someone to listen to me about the fact that what we were seeing in Kenny was absolutely NOT just language acquisition challenges? In how many of those meetings did I hold back the tears, knowing something was desperately wrong with my son and understanding that not a single person believed me or saw what I was seeing? Why did I...an uneducated, non-specialist, non-degreed mom...have to bring diagnoses to MD's and educators and beg for testing and be blown off time and time again, despite ultimately being proven correct in my personal assessment?

And there sat Kenny, always trusting me to have his best interests at heart, always working harder than any kid ought to ever have to work to do the simplest things, like learn to sound out words, learn phone numbers, learn to acquiesce with incredible grace when he made mistakes all day long.

The patience and forgiveness this young man has offered me, even when young, is beyond my understanding. How many times did I expect things of him that were impossible? How many times, in my lack of knowledge, did I hold his behavior up to him and point out how illogical it was, as if he could somehow "fix it" if I made him feel bad enough about it? How many times did I learn something new about his brain, and suddenly realize why he did the things he did, or didn't do the things he didn't do?

After years and years of adding up diagnoses, and pursuing every possible avenue for help for Kenny, I finally decided to look into Fetal Alcohol Syndrome. I "liked" a Facebook page many months ago for caregivers of those with FAS/FAE (Fetal Alcohol Effect) and it was a gradual "aha". The statements being made WERE the life we were living with Kenny. Why hadn't anyone ever suggested this, and why hadn't I put two and two together myself? Of course, I knew it was possible in some sort of distant, random way, but we kept being given specific learning disability labels with no umbrella ever suggested by a single specialist of what the true root cause might be. So, we focused on each development as it arose, accommodating as best we could with academics and ever changing expectations.

As I continued to read posts in this Facebook group, I decided we needed to pursue this, and spent months finding the right place to get an evaluation. We ended up trying to work with the University of Washington, as they have not only an international adoption medicine program with a fabulous MD who reviewed videos of Matt and Josh all those years ago, but she is also involved with the USA's longest running FAS Clinic at the U of WA. I came to discover that even getting permission to be seen by the clinic is a bit of a process, and we had to send in photos, provide a history, and needed to know if the biological mother used alcohol before we would even be considered for an appointment. Hmmm...good luck with that one when you have a child who was abandoned immediately after birth outside a police station with no note. The one thing that saved us in being allowed to apply for an appointment was that 8 1/2 years ago we immediately took Kenny to see Dr. Boris Gindis to be evaluated in his native Russian language, and in Dr. Gindis's report he stated that one of the orphanage documents he translated stated that at some point, there was a suspicion of fetal alcohol exposure for Kenny. That, along with the obvious challenges he has, was enough to have U of WA say "yes", and we are currently awaiting a date for an appointment for an evaluation, which we told will be 4-6 months from now.

This week, it really hit. FAS is hard to diagnose without firm knowledge of birth mom usage, and there aren't always facial feature anomalies as determining factors. Often, it is solely a broken brain that is the only clear sign of FAS/FAE. And that makes it harder, because these kids LOOK normal, but they absolutely can not think the way the rest of the world does. Like Kenny, they can also be quite bright, and yet their brain is broken and what might have been an exceptionally good brain misfires randomly and with no warning.

After another mildly frustrating day with Kenny, when everything was disconnected, and yet again he forgot to take a shower...and when asked if he forgot he couldn't even recall if had had showered 30 minutes earlier, I decided more research was in order. I sat down and started to seek more information, this time instead of searching for just FAS or FAE, I Googled FAS in Young Adults.

And there it was. Validation unlike any other I have ever found. A report was quoted that was generated by the U of WA about a long term study of 451 young adults over 21 years old and the statistics associated with their success.

Oh shit.

Sorry, but that was the only thing I could think of in the moment to say. Oh shit.

Not only have I been right all along when I have said, "I am not so sure Kenny will make it on his own as an adult, we will just have to wait and see.", but I was more right than I ever could have imagined. So many times in casual conversation about the kids and how they are doing I have mentioned something along those lines, only to have the person who knows him look at me like I

had a third eye sticking out of my forehead, or that I was some sort of slightly insane, over-thinking, overprotective mother. Kenny? That Kenny who can carry on a conversation for hours about any event in history and analyze current events in context? Kenny whose theological depth is truly almost unparalleled for a kid his age? Kenny who is funny and engaging and tender hearted? What in the world is wrong with Kenny? You must be nuts, mom.

The only person who truly believed it was Kenny himself, for he and I have daily fought on the battleground to regain brain function for almost 9 years now, and we both know something is just not right here. As he read some of the data I had found, as well as combed through an ebook I had downloaded, he looked up at me and said with conviction, "Yea mom, this is totally me...it's sort of like you wrote it specifically about me."

The statistics in the report were devastating, and yet so very sadly validated that sneaking feeling I have had for years. Not a single man in the study of 451 people was able to live independently unassisted. They end up homeless, victimized or in jail. Of the 451 people studied who are adults living with FAS/FAE, here are the percentages that needed concrete help with these daily tasks:

Yes, 4% even need help getting dressed. How many times have I had to tell Kenny that wearing long sleeved fleece shirts when it is 96 degrees out is probably not wise? Do you know Kenny has revealed to us that if he had to drive somewhere on his own, he would have no idea how to get to Walmart, church, or the library...and we live in a town with only 2 major streets. Even today, I sent him to go find a Tshirt for volleyball while we were shopping, and when he returned he admitted to me that he got lost and forgot which direction the grocery section was in. 16 year olds can find their way around the major departments of a Walmart...but not ours.

And helpful, wonderful, kind and caring people think that something as simple as "make him a list" will be a solution to a problem that is far larger than a list can solve. And that alone is so isolating as a mom, I can't even begin to tell you. It is isolating to have no one really understand the level of handicap because your kid looks normal and IS smart. It is terribly lonely to feel something in your gut and no one believes you, and you know you are losing valuable time trying to work with it because you don't have solid answers (and you have already lost half their childhood). It is isolating as hell to have to look your child in the eye, and tell them their dreams are truly out of reach, and they will need to lower the bar...not a little, but a lot.

The 2 x 4 of Grief whacked me in church this morning, after having spent several days this week in

conversation with Kenny over this, struggling to wrap our minds around the fact that, indeed, this lovely, inquisitive, articulate (when he isn't trying hard to find the right word that escaped his brain), wonderful young man will absolutely never be able to live safely on his own without a fair amount of support, and with the degree of deficit Kenny has, truthfully probably he will never be able to live completely alone. It is unsafe for him in many ways, and he gets that too.

I am sitting there with our family, a wonderfully challenging sermon had been delivered that "hit" me on so many levels, and it was time for us to share prayer requests. Now, mind you, no one is aware of this week's awareness that had struck us, no conversation had been had with anyone, and there were only about 20 of us in church today. The very first prayer request?

For parents who will be parenting children long into the future, who have kids who will need care all their lives and move into adulthood never being able to be independent.

It was so unexpected, so out of the blue, and even out of character as a request from the woman who made it, that I literally almost crumbled with the weight of the knowledge of God's presence in that very moment. It was impossible for her to know anything about our deep disheartening dismay this week, and yet there she was, sharing a prayer request about...well...us...without knowing it.

The tears welled, my chin trembled, and I had no idea what to do with what I was feeling. The weight of this very real awareness of what Kenny's future looks like was much more than I had realized until that very moment. And I knew then that God wanted me to have the courage to speak, to share, to allow the Spirit to be ever more present to me in my time of need, despite how foolish I felt knowing I would barely be able to even find the words, despite how desperately I just wanted to be alone in some ways with this, despite the embarrassment I knew I would feel at being so publicly vulnerable.

But, do we take the Gospel seriously, or do we not? Do we seek out God's healing presence or do we stubbornly insist on going it alone? Do we shed our tears in private, or worse, hold them in? Or do we dare reveal to the world our pain, our longing, our fear, our sorrow...our Grief? This was Grief I am just beginning to grab hold of, and have little understanding of. This is Grief that is layers and layers of "stuff". It is frustration, realization, self-flagellation. It is sorrow for what can't be but might have been if only...if only...if only...

Sitting there, trying to speak, I knew that part of the need to share was to rid myself of misplaced shame and to lift up Kenny's experience and our family's experience of walking through the world with children who have been hurt by others, and yet make it somehow...through faith, through love, through sheer determination, and through the power of community...the very community that sat right there with me, patiently waiting for the ache and the tears to subside long enough to speak.

I was inarticulate, I was unable to look up, I was unable to do much more than briefly share what had just happened for me, and to mumble words of heartfelt gratitude that, at the very least, I knew we weren't going to walk these next miles alone because of our faith community's care for us, shown in a million little ways.

And you know what? No matter what happens in the future, Kenny is a beautiful soul, who has already touched so many lives. I can't help but give be SO SO SO thankful to be his mom. I can't help but be thankful for how, in some ways, I have been broken time and time again by being his mom, learning and growing right alongside him. I can't help but be thankful for the subtle nuances of "knowing" that have helped me not to give up, and spurred me on to discard the "experts" who said, "He is just mentally retarded, you may be expecting too much."...a more laughable statement has never been uttered, as anyone who knows Kenny would attest to. To say that flashes of brilliance are there wouldn't even be much of a stretch.

The Grief hid from me, I wasn't aware of how rooted it was as I immediately went upon the task of beginning the net phase of research. I was't running from it, truly I wasn't. I didn't stop, I didn't allow for a moment of sitting with it emotionally, so God made sure that happened with my 2 x 4 today, for I need to grieve, this unique kind of Grief that thankfully not many are familiar with...the Grief of giving in to reality, of better knowing that some things truly won't get better, the Grief of having to help someone accept what will be when they are only 16 years old. I'll share more later in the week what that has looked like for us...but let me say that it is imperative at this age that we begin to be realistic and honest about what the future looks like, and not play the "Well, don't make him feel like he can't get better." game. Our family does a very good job, I think, of holding in proper tension hopes for the future and for possibility right alongside acceptance of truth.

My 2 x 4 came in the shape of a lovely 70 something woman this morning, who had no idea God was using her. How blessed I am that the Spirit has listened to my request from years ago about making things abundantly clear to me, so that I might better enter into relationship with God and not miss lessons to be learned, opportunities to be jumped into, and relationships that are life giving. How much more I have felt, how much deeper I have been drawn, and how much love I have experienced because of a 2 x 4 moment.

The Grief will remain awhile, until it dances gracefully offstage to be replaced by new dreams, new visions for futures, new happiness which no doubt awaits. I trust that. God is ever faithful. Always.

And as another piece of Divine Intervention we sang my very favorite Taize chant of all this morning, smiling as Angie looked over at me upon reading the bulletin and saying, "Look Mom, it's your song!"...a chant I sang over, and over, and over again as I waited for the girls to come home, a chant that has gotten me through thick and thin...the brief yet oh-so-appropriate words so often a balm to my soul.

As I read your post and thought about the part where you mentioned young adults with FAS are often/usually victimized or end up in jail, I kept thinking how lucky Kenny is that this will not be his fate. He has a loving family who are and will continue to advocate for him.

If you were standing in front of me, I'd give you The Biggest Hug Ever.Grief ... no one ever wants to face it. And our minds often protect us by pushing it onto the back burner without us ever realizing it's even THERE. At least until it sneaks up on us like a ninja, when we are least expecting it. But once it's made known to us, the most healthy, albeit painful thing to do is ... walk through it. Just as you are doing. So many of us try soooo hard to return it to the back burner of our minds. Get busy, distract ourselves, deny it's existence. But as it lies back there, it only festers. And it demands to be dealt with at some point.Thank you for being so open, for sharing your pain, this heavy mantle of grief. But with God, you know He will provide guidance, comfort, and in time ... peace.Kenny is beyond blessed to have you as a mom, beyond blessed to be in the wonderful family he is in. I know you don't want accolades, and that's not the point of your blogs or even the point of this comment. I just want to encourage you to walk through the valley, your family at your side, knowing God is with you at every single step. He's going to walk with you through self discovery, painful revelations, and ultimately into a stronger, richer, deeper faith in Him.I'm so thankful for your church family. And I'll keep you and your family in prayer. I'll pray for comfort and guidance as you walk through this grief.Hugs, love and prayers.Jen

Oh, dear one. Our Caleb held such promise when we got him at 2.5 years old. He'd be walking in 6 months, they said. He's almost seven and now he can't stand. It's looking like muscular dystrophy on top of the cerebral palsy and this has been a bad year. He will always need help and he won't ever get better. He's at his peak of physical ability now, now likely. If one more person tells me about the essential oil to solve his issues, will you bail me out of jail? Watching my own dreams for him die so that I can embrace the actual child in front of me is hard. We can do it, though. With God's help. Love you.

I stopped via a like on FB from Hilary Marquis. My daughter has a soft PTSD diagnosis and I definitely relate to feeling grief over the "diagnosis." I think the rest of what you have written is beautifully honest and informative for people who do not know much about FAS/FAE (or even adoption seeing as part of your struggles include missing pieces). I don't know much about what the future holds but I do know this: God's presence in your life and Kenny's is an absolute.

Thank you for writing this down and sharing it. Today, you are my 2 x 4. My youngest is 20 and will never be able to live alone. She has deep anxiety, crippling fear all the time. It isn't lack of faith, it isn't poor upbringing, it isn't anything that ordinary people think it is. It's brain chemistry and a traumatic childhood illness. I've just decided this week that I need to apply for Social Security Supplemental income for her. But I haven't dealt with that heart wrenching grief. So thank you for the smack upside the head.

Both of my children (adopted) have FASD. I had suspicions within a few weeks and now being a mother for almost 4 years to them, I see it very vividly in the adoption community, yet so many parents don't want to the diagnosis, it is hard to advocate yet let people get there in their own time. My children's younger bio sibling's adoptive family won't even get him tested, but the signs (and his sibling's diagnosis) all scream FASD. It's hard to know what to do.

It is a hard, lonely road. And yet now (for me) everything makes sense. I smiled at your comment about long sleeve in the summer, we have that conversation almost daily. It's hard to have to live on repeat. My son will never grow up and that is hard. My daughter I just don't know. I think she'll need some help her whole life, but can likely do more than her brother. I will send you my blog via email.

So many hugs. I found out via a 1 minute "so they have it" from a nurse who then walked out. No resources. No education. As a lone parent I went home and cried and cried and cried.

I am in tears reading about your grief. How much I wish I were there with you to sit beside you and cry with you and cry with Kenny. He is so dear and always has been and so wants what everyone else has. We just never know what other people carry as burdens because we just aren't equipped to share at a level of depth as you have done. God will continue to appear and let you know you are loved no matter what happens I the midst of such a lonely journey. May God bless and keep us all in communion with the Spirit and one another. Joan

I have two internationally adopted son's both with complex issues. One of whom is already in a group home at 16 due to the severity of his. I do understand how hard it can be and it helps a lot of find others who "get it". Both my sons pediatrician has been one of those who work at the fetal alcohol clinic. If you need a place to stay when you are in Seattle for your appointment let me know. you'd be very welcome to stay with me.

Dear Cindy,Due to a complex set of circumstances including a failed adoption when Azerbaijan closed to adoptions, we ended up adopting 2 6 year olds who we knew had FAS from Lithuania. I am no stranger to grief, as I still am far from over losing the 4 year old sister that we went over to adopt last year. Sadly, before we could get her to the tube-feeding treatment she needed to overcome the lethal combination of malnutrition and FAS, her poor overburdened heart stopped. For me, your words about grief resonated in many ways, just as I often find you ministering to me through your blog. But your mention of the FAS clinic really piqued my interest. Most of what I have learned from the medical community has been terribly defeatist. So, if all they talk about are external crutches and meds, well, BTDT (we are just starting with meds). But, if they talk about any therapies for actually healing the brain, I hope you will blog about it. We tried neurofeedback, and it definitely helped some, but frustratingly, for each girl, it rather significantly improved the things they already did best, while the true areas of deficit were unchanged. We may try further LENS treatment but for now we are out of money. I have heard that a big area of FAS damage is the hippocampus, and I wonder whether cross-brain work might help (pianists actually "grow" that area of the brain), but it seems to be pretty slow slogging. I believe that during our children's lifetimes, If our medical research continues, there will be actual therapies to re-grow some of the areas that have been damaged. So, keep up hope and, along the way, thank you so much for your ministry.Sherry

Our daughter age 21 has shown all the signs & symptoms of fasd for years. But last year she told me "I read about it, and I don't have it." End of discussion. However, her daily life is lived consistently As If ...

Her community college course are described as "boring" ... which we understand to mean, too difficult. I personally do not care about her classes At All -- MUCH more concerned about her reasoning, planning, decision-making and commonsense skills.

And more than all those ... worried about her Relationships ... because she is going to Need People around her who Care. Sadly, she is quite an expert at alienating anyone in that category ... starting with her family.